Carers Hub

Living with early Alzheimer’s disease is not only an adjustment for the patient but also the carer. We understand that every day is different and no journey is the same. Below are a range of articles offering you tips and support to help with caring for those with early Alzheimer’s disease. It is also important to remember to take time out to care for yourself as well.

Article 1: Why Staying Active Matters?

Staying active is important when living with early Alzheimer’s disease and carers play a vital role in ensuring the ones they care for continue to do all the things they love. Some of these activities could include spending time with family, socialising with friends and keeping up with hobbies.

You may also suggest taking up new activities which they may find rewarding and can help them stay independent. Whether it’s going to an art class, learning to sing or taking up fishing, there’s something to suit everyone.

Early Alzheimer’s disease appears to affect certain parts of the brain but leaves other parts active and functioning. For example, while painting people living with Alzheimer’s disease may have difficulty copying images but they can continue to produce art using their remaining strengths such as colour and composition. Encouraging the uptake of creative activities can have many benefits:

  • An outlet for emotion:
    When people with Alzheimer’s disease find it difficult to communicate how they feel activities such as art can allow them to express themselves without the need for words.
  • Sense of accomplishment:
    Creative activity can be a very rewarding and a positive experience for someone living with Alzheimer’s disease because it allows them to use the skills that they still have.
  • Promoting relaxation:
    Creative past-times such as looking at art or listening to music may help to relax and improve mood.
  • Bringing people together:
    Creative activities are an ideal opportunity for a you and your loved one to spend time together.
Article 2: Communication Is Key

When living with Alzheimer’s disease, maintaining everyday communication is really important for both the person living with Alzheimer’s disease and the people around them. In the early stages forgetting words, misplacing things or having difficulty understanding instructions can be frustrating. However learning about the condition and what to expect can greatly improve communication.

During the early stages of Alzheimer’s disease people may start to notice they become forgetful or have difficulty expressing themselves. People may lose their train of thought mid-sentence or need more time to respond to what others are saying. This is because Alzheimer’s disease affects communication skills and makes it harder to find the right words and to understand others.

It’s important to remember that although people living with early Alzheimer’s disease may have problems communicating they are still very aware of the people around them. Many of us don’t realise we speak loudly when we think we’re not being understood so remember to always talk in a normal voice and try not to argue.

Talking to each other regularly is also key to successful communication. The person your caring for may have trouble expressing themselves and this is perfectly normal. However, talking about the diagnosis can be useful for you both. Learning about the condition together and knowing what to expect can be an important way to help plan for the future.

There are several other strategies to consider that can help you improve communication with the person you are caring for:

  • Listen and be patient:
    One of the most important things you can do to help the person you are caring for is to listen to them. Make an effort to try to understand what they are saying and don’t rush them when they are speaking.
  • Speak in your normal voice:
    Speak clearly and give the person time to respond. We tend to speak slower and louder if we think we are not being understood so think about how you reply.
  • Keep instructions simple:
    To avoid confusion only ask one question at a time. Identifying the names of people or things can help. The person with Alzheimer’s disease may find it useful if you use using short, simple words.
  • Use reminders and memory aids:
    Writing lists, sticking labels on familiar objects and placing objects such as keys and phones in familiar places may all help.
  • Be encouraging and positive:
    Try not to interrupt or correct sentences while a person living with Alzheimer’s disease is talking. It can be very discouraging.
  • Be aware of your body language:
    People can pick up on your mood from your facial expressions and body language so maintain eye contact when speaking.
  • The value of touch:
    Little things like holding hands can help communicate you care without words.
Article 3: Making The Most Out Of Doctor Appointments

For the person you care for to really benefit from their healthcare professional appointments, it is important for the both of you to communicate well with the doctor and medical team about any health concerns.

Below are a few strategies you can try at your next appointment to help with more successful communication:

  • Plan ahead:
    Before the appointment, take some time to think about the main questions you and the person you care for would like to ask their doctor. Write these down, and discuss them with a family member or close friend if possible. They may help by reminding you of something you have mentioned that has been troubling you.
  • Take along a family member or close friend:
    Having another pair of ears or someone to take notes for you can be useful. This can allow you to focus on what the doctor is saying. You may also find it helpful to have someone to discuss any issues with afterwards.
  • Take all the time you need:
    Do not feel you have to rush through your questions to keep the visit short. Also take the time to give the doctor as much information as you can. This will help them better understand your loved one’s condition.
  • Ask for further explanation:
    You can always ask the doctor to explain something again if you do not understand. If they use medical terms you are not familiar with, or what they say does not make sense, you can ask them to explain it more simply.
  • Relax:
    It is important you and the person you care for feel comfortable enough with their doctor to talk to them about any health concerns. It may take time to feel totally at ease with one another, but if after a while you or the person you care for still do not seem able to connect with their doctor, it is okay to change to one who better meets your needs.
Article 4: Strategies To Help Those Dealing With Memory Loss

It can be difficult for the person you care for to accept what little memory lapses could mean, like forgetting where they left the remote control or what time they were meant to meet for lunch. For many people in similar situations, it is common to feel frustrated, embarrassed or sad, among other emotions. The important thing is that the person you care for finds their own way of coping with these feelings. It may help for you to encourage them to try some of the following:

  • Talk: Sharing their feelings with a trusted family member or friend can help them better understand their situation and feel a sense of support.
  • Cry: It can be a huge relief to cry – tears release chemicals in the body that help make people feel better.
  • Laugh: This also triggers the release of ‘feel-good’ chemicals in the body. Encourage the person you care for to take any opportunity to laugh about the funny side of life.
  • Enjoy: Continue to support them to do the things they enjoy, as this can give their mood a boost if or when they are feeling down.
  • Let Go: There may be times they become stressed or frustrated trying to remember something. Remind them to be kind to themselves – take their time, try letting it go and focus on something else.
Article 5: Coping With Day-To-Day Living

Some days you will feel that the memory of the one you are caring for is better than on other days, which is quite normal. But if they are finding it more difficult to get through the day, there is a range of things that can be done to help make life just that little bit easier.

  • Help them keep a notebook of important things like phone numbers, addresses and to-do lists to carry at all times. They could also write things in the notebook throughout the day
  • Put up a whiteboard or corkboard so they can write things to remember for the day or week.
  • Give them more time to complete tasks, and do not let them be rushed by others. If they are struggling, encourage them to take a short break before continuing. They could also try breaking tasks into smaller steps which they can tackle individually.
  • Leave written reminders where they will see them, for example, on sticky notes placed on the bathroom mirror.
  • It is okay for them to ask someone to repeat what they said, if they did not catch it or did not understand.
  • Help them stay in close contact with family, friends and their doctor. They can be a great source of support and advice.
  • Maintaining a healthy lifestyle by eating a healthy, well-balanced diet and participating in regular physical exercise can affect a person’s overall sense of wellbeing and give them more energy for each day. Before making any changes to their lifestyle, please speak to their doctor.

SOURCE: Taken from the Souvenaid Welcome Booklet

Article 6: Adjusting To The Life Of A Carer

It is all too easy for people caring for loved ones with Alzheimer’s disease to put their own needs last. But it is important for you, the person you are caring for, and those around you, that you consider your own needs too. Here are some simple steps that can help you cope.

  • Acknowledge your feelings:
    As a carer, you may experience a wide range of feelings, from guilt and grief to frustration and anger. While there is no simple way to deal with these feelings, they are completely natural. Allow yourself to really feel what you are feeling.
  • Take time out:
    Taking time to relax at some point every day, whether it is something as simple as reading the paper or sitting down with a cup of tea, can help you better cope with your role. If possible, aim to go out once a week to meet friends and do something you enjoy.
  • Build a support network:
    Ask family, trusted neighbours or friends for a hand. If this is not an option, take advantage of carer support services that may be available in your area. LEARN MORE (Button links to Community Support Page)
  • Be kind to yourself:
    Do not fall into the trap of listing all the things you think you have done wrong each day or endlessly imagining what you could have done differently. Providing care for someone can feel like a thankless task, but what you are doing is important and valuable. It is okay to remind yourself of that.

Stay healthy:
Looking after yourself starts with your physical wellbeing. A healthy, well-balanced diet and regular physical exercise may help you feel more energised and may help improve your mood. Also make sure to visit your doctor regularly to check up on your own health as well as discuss any concerns you may have.